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EXPERIMENTAL FERTILITY PRESERVATION INTERVENTIONS IN PRE-PUBERTAL
BOYS WITH CANCER: A REPORT ON PREFERENCES OF TEENAGE CANCER
SURVIVORS, PARENTS, AND PROVIDERS
Abha A. Gupta1; Rachel Donen2; Lillian Sung1; Katherine Boydell4; Leila
Bahrambahri2; Anisha Prasad2; Sina Hadipour-Lamehsari1; Kirk Lo3;
Armando Lorenzo2
1Haematology/Oncology, The Hospital for Sick Children, Toronto, ON, Canada;
2Urology, The Hospital for Sick Children, Toronto, ON, Canada;
3Urology, Mount Sinai Hospital, Toronto, ON, Canada;4Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, ON, Canada
November 2, 2013
Objectives
Parents, Providers & Survivors1) Identify the factors influencing pre-pubertal testicular
biopsy decisionsInterviews
2) Quantify preferences for testicular biopsyThreshold Technique
I = interstitial spaceSg = spermatogoniaSc = primary spermatocytesSd = spermatidsSt = Sertoli cell nuclei
Pre-Pubertal Pubertal
Male Fertility
• Pre-pubertal testes contain primordial germ cells that are also
susceptible to toxicity but do not contain mature spermatocytes
Infertility - CCSS Experience Abnormal semen parameters were noted at
cyclophosphamide dose > 7.5 g/m2
Permanent azoospermia consistently observed after the following total doses: • cyclophosphamide > 19 g/m2
• ifosfamide > 60 g/m2
• cisplatin 600 mg/m2
Lee SJ et al, JCO 2006
Alkylating Agents = Prolonged Azospermia
Most sarcoma therapy = Guarantees infertility in males
Fertility Preservation
Post-pubertal boys (Standard of Care)Sperm banking
Testicular biopsy/Mature tissue banking
Mature sperm taken out IVF and/or ICSI
Fertility Preservation
Pre-pubertal boysTesticular biopsy/Immature tissue banking?
Experimental
Extraction/Maturing sperm
IVF and/or ICSI
We can do it in mice…
First Step
Before develop fertility programIdentify needs, obstacles and resources
Preliminary researchAre parents even willing to consider testicular tissue
preservation at diagnosis?
(Ginsberg et al., 2010; van den Berg et al., 2007; Wyns et al., 2011)
Methods
Mixed methods
QualitativeInterviews
QuantitativeThreshold Technique
(Greene, 2007)
Methods
Participants
Parents of PP boys with cancer
Oncologists, NPs, Social Workers
Survivors (male, AYA 14 -18 years)
Main Interview Questions
Providers:• Which options would you present to families?
Parents and Survivors:• Would you choose biopsy or no biopsy?
All Groups• What kinds of things do you think about when trying to
make your decision?
Methods: Threshold Technique
Testicular biopsy
vs.
No testicular biopsy
Data Analysis
Since November 2012• 45 interviews and 258 surveys completed
DemographicsParents =156
males = 9
Median age 42 (range 23-62) years
Providers = 34
2NP, 2RN, 1 SW, males = 11
29 were parents
28 knew someone who had had fertility treatment
Survivors = 78
Median age 17 (14-26)
Leukemia 40, sarcoma 9 , lymphoma 11, other 18
Baseline Scenario
• 50% Risk of infertility from treatment• 1% Risk of Complications from biopsy• 15% Chance technology develops• $350/year cost to store tissue family pays
Preliminary Results
Preferred biopsy
• 110/152 Parents(72%)• 57/75 Survivors (76%)• 23/31 Providers (74%)
• …factors influencing their decision?• Risk of infertility, complications, cost
52% 14%39% Parents
70% Survivors
30% Providers
17% 12%
65% 5%
Why Biopsy Preferred
Chance for patients to have kids
“It’s just important everyone has a chance to raise a family if
they want to. And that just because they were unlucky and
got cancer there’d still be a way that they could end up
having kids.”
Survivor
Preliminary Results
Parents and Survivors desires:
94% Parents want biopsy option presented
89% Survivors want biopsy option presented
Preliminary Results
Need for Full Disclosure
“I think it’s part of disclosure. I feel if you found something on your own that
your doctors didn’t tell you about, there is a risk that you are resenting
the doctors for “Why didn’t they tell us about this? Why were we lucky
enough to find out about it on our own and a lot of people wouldn’t be
as lucky as us?
If I found out later… that you could have but nobody mentioned it, we
would be angry.”
Parent
Conclusions
Parents and survivors Prefer Biopsy
Survivors and parents want to know about testicular biopsy
before treatment starts
Next Step: Knowledge Translation
Develop FP Infographics
1) Sperm banking
2) Electro ejaculation and mature testicular tissue banking
3) Immature testicular tissue banking
4) Oocyte storage
Infographic Example
Questions?